Does it look like CFS to you guys

[Amaya2014]

@Hip I still can't find the part on anxiety. Would you send me your link...perhaps page would help if I'm just overlooking it.

It's my opinion but the confusion would seem to come only if the doc thinks ME/CFS and only pays attention to the symptoms that support the diagnosis. Most patients come and unload the litany of all they are experiencing. I don't see where a doctor would identify ME/CFS from such a symptom list...especially when they are so reluctant to diagnose it now. But, you never know....

 

[Hip]

@Hip I still can't find the part on anxiety. Would you send me your link...perhaps page would help if I'm just overlooking it.

There is actually a duff version of the CCC overview pdf document online, that for some reason does not respond to Find searches (even if you search for a word that is clearly in the pdf, it finds nothing). Very confusing when you have brain fog! I was fooled for years! A version of the CCC overview that does work properly is given here.

The paragraph on anxiety that I quoted above comes from page 14 of the CCC overview.

 

[Gingergrrl]

Deleted b/c off topic to original poster

 

[Hip]

@Gingergrrl
In order to get a better response, and for more people to see it, it might be an idea to ask your question in a new thread, listing all your symptoms and any diagnoses you have received so far in that thread. I for one will come over and have a look at your thread when you start it.

This thread is about the Chinese "HIV-like" virus and its symptoms.

 

[Gingergrrl]

Deleted b/c OT to original poster.

 

[Hip]

@Gingergrrl
If you are saying that you do not have fatigue, PEM, sleep dysfunction, pain or cognitive issues, to my mind that would seem to rule out ME/CFS; but then the mystery is what do you have. That question deserves a thread of its own. I would list as many symptoms as you can in the new thread, perhaps in some sort of grouping (eg: all your autonomic symptoms, breathing symptoms, endocrine symptoms), perhaps with any test results you have, and any tentative diagnoses given; and then maybe as people like myself read it, some ideas might pop into our (amateur) heads.

After what you said in your above post, it made me want to look into your symptoms more, so that's why I think a new thread might be a good idea.

You could copy much of your above post in the new thread, as I think it is just as important to say (as you did) what you don't have, as well as what you do have in terms of symptoms.

 

[Gingergrrl]

After what you said in your above post, it made me want to look into your symptoms more, so that's why I think a new thread might be a good idea.

Thanks @Hip but please don't worry about trying to do that or making a new thread. I was just curious since this one was discussing the criteria in which I match some but not others. I may make a new thread on this some day but not enough time tonight! Sorry for taking this one off-track to the OP.

 

[Hip]

Thanks @Hip but please don't worry about trying to do that or making a new thread.

No apologies necessary, @Gingergrrl. It is actually is a good thing you posted above, because from reading your post, it just struck me that I think you should be considering other diseases. Your OI stuff matches up to the sort of OI you get in ME/CFS, but I you seem to be missing a lot of ticked boxes for what you have to be ME/CFS.

One illness that did occur to me when reading your above symptoms is chronic obstructive pulmonary disease (COPD), which might explain your severe shortness of breath. COPD could also explain the "thick glue-like phlegm", as you get sticky phlegm with COPD.

COPD can also trigger autonomic dysfunction with sympathetic dominance (which could explain the tachycardia). And COPD involves cardiovascular symptoms, and involves exercise intolerance and decreased physical activity.

Here is one article: Sympathetic Overactivity and Cardiovascular Disease in Patients with Chronic Obstructive Pulmonary Disease (COPD)

 

[Gingergrrl]

Thanks Hip but 100% do not have COPD or any obstructive pulmonary disease based on 4-5 PFT tests, lung cat scan etc. I have a pulmonary restriction (not obstruction) and believe me that I am considering other diseases and figuring this out has been my sole focus (besides my family and friends) for three years.

The thick glue like phlegm is strictly in severe mast cell reactions triggered by food/histamine and does not occur any other time. I can go weeks without this happening and if I eat a food that triggers the reaction it is instant but is now well enough controlled with meds that am not getting anaphylaxis.

I know you like to figure things out (and I know I brought up the topic) but maybe better to talk via PM so this thread can go back to original topic for the OP.

 

[Hip]

@Gingergrrl
Perhaps we could ask the mods to move the above posts, starting from your post #23, to a new thread, and then continue from there. Or if you prefer, we can talk via PM; but allowing others to read and comment generally gives a better result, I think.

 

[Deltrus]

I feel like humans follow trends in disease. Like, for example, someone wouldn't normally couple fatigue and anxiety, if they were a kid thinking about this stuff. And yet they extremely often come together.

At the same time, from my experiences supplementing different nutrients, breakdowns in nutrient metabolism seem to follow similar patterns. They produce similar disease states, symptoms that resemble CFS. So many metabolic pathways, and pathways that process nutrients, are dependent on each other. I believe that CFS is just the entropic state that the body takes when so many metabolic pathways fail. Of course the question is what the root cause of this failure? Heavy metals? Virus? Nutrition from a young age? High amounts of certain metabolites?

China has a huge pollution problem, people don't even go outside because their houses are airtight enough to keep much of the pollution out.

China also farms a lot of their own food, and takes a lot of herbal remedies, both of which concentrate heavy metals. I really doubt that China does a lot of testing either.

Another problem China has, is that most of the population is in complete denial over health science. They have a culture in which they overeat, overdrink, smoke etc. They get rhino and elephant horns as folk remedies. China has some really amazing medicine, just their society is in a transition period and people get really confused. Even North America gets confused when it comes to medicine, we just have a bit more of a head start.

Combine all this together and people are going to trend towards CFS symptoms. Heavy metals and toxins break down enzymes and more and more things go wrong. People in China will get more and more sick.

As such, I really don't think we can draw much information from people with CFS in China unless they find an actual biomarker.

 

[Gingergrrl]

@Gingergrrl
Perhaps we could ask the mods to move the above posts, starting from your post #23, to a new thread, and then continue from there. Or if you prefer, we can talk via PM; but allowing others to read and comment generally gives a better result, I think.

I think I will leave it alone for now but thank you anyway. It seemed like this thread was discussing the criteria and I was just curious if I met enough criteria to be CFS vs. non-CFS but I truly don't need a separate thread on this right now. I apologize for detracting this thread and if it's okay with you @Hip, I'd like to let it go for now.

 

[justy]

ME/CFS needs to replace lupus as the great imitator! I'm trying to get some understanding here. @justy, are those symptoms you attribute to ME/CFS or do you have a couple of co-morbid conditions? Also, do you think your illness is represented well with this symptom list: https://sites.google.com/site/newhivaidslikeviruschina/

Yes the symptom list is eerily familiar - apart from skin issues and white tongue (but have had red spots on the tongue as per the picture) never had depression, but the severe anxiety state lasted years - has gone now.

I attribute my symptoms to a number of things, especially since I have been able to have further investigations by an ME specialist.

He has found I have:
Lyme disease
Bartonella
Chlamydia Pneumoniae,
severe intestinal permeability (I have gut bugs in my blood stream)
High inflammatory markers
Low positive anti nuclear antibodies
HIGH NK cell expression

I also have a diagnosis of Mast cell Activation disease, ost likely secondary to the above issues, but it may be a primary mast cell issue - impossible to get adequate testing and treatment for this in the UK.

 

[justy]

I think I will leave it alone for now but thank you anyway. It seemed like this thread was discussing the criteria and I was just curious if I met enough criteria to be CFS vs. non-CFS but I truly don't need a separate thread on this right now. I apologize for detracting this thread and if it's okay with you @Hip, I'd like to let it go for now.

It looks to me, form what you have written that you don't fit the ME/CFS criteria. But then didn't you see a top CFS expert?

Once you start reading Dr Afrin's book, it think you may see that, apart from the rare antibodies (which ones are they?), then MCAS can make people as sick as you or I and present very differently in different people. Im beginning to wonder if MCAS is my PRIMARY dx. It seems it was triggered by a particular, relatively recent event, but looking back in my history I can see clues - Dr Afrin describes it as a stepwise approach to becoming more ill with MCAS - this fits me, I just didn't see it before.

I don't think I will get any real clues unless I see both a top Lyme doc, and a top MCAS doc - and all of those are in the states...no chance!

 

[Amaya2014]

@justy so sorry you're dealing with all of that stuff. I'm sending a PM to you.

 

[Gingergrrl]

It looks to me, form what you have written that you don't fit the ME/CFS criteria. But then didn't you see a top CFS expert?

Yes was diagnosed by a top CFS expert in 2014 and b/c of my high EBV titers (on five different tests including IgM+ and EA) plus very low NK functioning, he felt it was a solid case. I still really do not know myself and so many diseases have different lists that can overlap IMO.

Am hoping this is helpful for the OP as he is also trying to figure out which illness he has (which has been an impossible task in my case.) At this point am just trying to accept that I've had multiple hits to my immune system and this is how it is manifesting for me (regardless of which criteria list I closest fit with?)

Once you start reading Dr Afrin's book, it think you may see that, apart from the rare antibodies (which ones are they?),

I should clarify that only one is super rare (it's called N-type calcium channel Antibody) but the others anti GAD65, the two hashi's Abs, and one for premature ovarian failure are not that rare. All are auto-abs and with further testing, I suspect that I have even others not known about yet.

Im beginning to wonder if MCAS is my PRIMARY dx.

My MCAS doc and two Masto groups that I belong to believe that only mastocytosis is a primary dx and MCAS is always a secondary dx (but I cannot say if this is always true.)

I wish that you and the OP both had access to the right doctors and treatments. It's taken me three years of searching to get to the point I am at now and am still not certain that I will be able to receive the treatments that I believe can help me.

When I posed the question, it was b/c I was curious if I met enough of the criteria for ME/CFS but am not trying to get anyone to diagnose me! I relate to the OP in trying to figure out what you have (although I definitely do not have the Chinese virus or match with the symptoms listed for that.)

 

[Hip]

As such, I really don't think we can draw much information from people with CFS in China unless they find an actual biomarker.

There were a number of studies on the "HIV-like" virus in China, which identified some of the characteristics of the pathogen. A 2013 study in China found that most patients had the rather unusual physical symptoms of constant popping or cracking sounds from their joints every time they move, constantly twitching muscles, and a chronic sore throat. There were many more mental and physical symptoms, but those particular symptoms were found in most patients.


I am in touch with an oncology consultant who is currently conducting a study in Germany on the possible link between high titers to coxsackievirus B and cancer. His study is not at all related to the Chinese "HIV-like" virus, but this researcher told me that a significant number of people in his study reported that they contracted their infection while in China, and these same people also report that they are experiencing symptoms that resemble those of Chinese "HIV-like" virus. For more info, see this researcher's comment on my website here.

 

[Justin_Sohan]

This looks like classic mass hysteria to me. It has been around since at least 2010 and as far as I know so far there are no publications on it in English (the site gives citations that are in Chinese it seems). The symptoms look like a random range of things people will worry about. Nothing makes any immunological or microbiological sense to me so far.

If it was as infectious as suggested there would be thousands of people who have flown to the UK and US presenting in A and E with purpura or whatever. Some resident would have written it up.

I am always ready to change my mind but this looks like empty scaremongering, not ME/CFS.

@Johnathan Edward Hi Jonathan, when the first group patients went to Beijing for the help from CDC in 2010, they are also told that the symptoms were "all in mind" or "AIDS-phobia". Some of them believed, and went back home only to find the whole family got the same symptoms. Now after six or seven years, some of the earliest patients died, some of them still live their life in pains. While the number of infection keeps increasing, I and my girlfriend are the victims for example. As you are wondering why no English publication about this, it might be the government censorship, even some active patients are under the surveillance of local police both online and off-line. Only the hospital of the Third Military Medical University is willing to give us diagnosis yet no treatment can be provided so far.

 

[Jonathan Edwards]

@Johnathan Edward Hi Jonathan, when the first group patients went to Beijing for the help from CDC in 2010, they are also told that the symptoms were "all in mind" or "AIDS-phobia". Some of them believed, and went back home only to find the whole family got the same symptoms. Now after six or seven years, some of the earliest patients died, some of them still live their life in pains. While the number of infection keeps increasing, I and my girlfriend are the victims for example. As you are wondering why no English publication about this, it might be the government censorship, even some active patients are under the surveillance of local police both online and off-line. Only the hospital of the Third Military Medical University is willing to give us diagnosis yet no treatment can be provided so far.

I do not doubt that there are people in China with similar problems to PWME elsehwhere. What I would be very sceptical about is some special infection in China responsible. We get to hear about infections in China and there are publications. As far as I can see there is nothing to indicate an infection here. I am not denying that ill people are ill, just sceptical about over simple explanations.

 

[Justin_Sohan]

I do not doubt that there are people in China with similar problems to PWME elsehwhere. What I would be very sceptical about is some special infection in China responsible. We get to hear about infections in China and there are publications. As far as I can see there is nothing to indicate an infection here. I am not denying that ill people are ill, just sceptical about over simple explanations.

I understand that there is no direct scientific evidence to prove the infectivity. The problem here is, no institution we know is willing to help. That is what drives us crazy. I believe we deserve to know what it really is, and if it is contagious, how can we prevent people we love from getting infected. But we have to face the hopeless truth every day.

I noticed that you are a retired professor of UCL. I get an offer from UCL this year, but I don't know if I could continue my plan with my poor health condition.

Anyway, thanks for your kindly reply .